Strength in Numbers

Like many registries, though, CORRONA enrolls patients chiefly through physicians who are based at academic medical centers.

As a result, less than three percent of rheumatoid arthritis (RA) patients in the U.S. are followed by registries.

A registry that enrolled just five percent of the estimated 1.5 to 3 million people in the U.S. with RA, as AIR aims to do, would have more than 100,000 members.

“[Through physician-based registries] We only get a small sample of the patients we need,” says Robert Plenge, MD, PhD, a rheumatologist and geneticist at Harvard University and a principle architect of the AIR.

Without larger cohorts, or patient groups, Dr. Plenge says, it’s very difficult to track “rare phenotypes, rare outcomes to find patients with multiple family members with RA. Those families are really hard to find.”

Large registries have already revolutionized medical care for many people with relatively rare diseases.

The Cystic Fibrosis Patient Registry, for example, which is managed by the Cystic Fibrosis Foundation, is credited with helping to nearly double the life expectancy of the estimated 30,000 people with cystic fibrosis in the United States.